Missouri Advocates For Families Affected by Autism

We are a citizens action group advocating and lobbying for families that have a child with special needs. We believe that EVERY child has a right to a FREE and APPROPRIATE EDUCATION and should NEVER BE LEFT BEHIND.

Sunday, June 30, 2013

In a recent story, a private club with a swimming pool will not allow a child with autism to use a floatation vest causing, obviously, the family not to join the club. Officials at the club say they don’t allow anyone to use floatation devices of any kind, and “if an exception was made for one, an exception would have to be made for all, and that was not possible.” Why is it hard for the pool board to say yes to this family and no to others who many complain?
Every. Single. Day. There is a reminder of how families with a child (or more) with differences has to fight and sometimes for the simplest of things, like the right to attend events and the right to live in the community and productive.
During the time that my kids were at their local public school they were really sick. My son was on hemodialysis (at the hospital three days a week) and they both had kidney transplants at age eight. They were out for recoveries from multiple surgeries, procedures and illnesses connected to their health condition. Many times I had to run in and get the kids right before the end of the day. Technically I should have picked them up 45 minutes before dismissal. But because they also wanted the kids to be able to be in school as much as possible given their delays (and I wanted to be at work as much as possible), they let me pick them up right before dismissal, sometimes by just a few minutes. Seeing me approach the door, the staff in the front office often called for the kids before I opened the office door. They made an exception. Because it was best for the kids and for the family. I’m nothing special, they would have done it for any family in our situation.
Exceptions sometimes need to be made. We’re a world of different people and different situations and some people need exceptions.
We need extra time to arrive and leave and sometimes we need extra space. We need patience and understanding by people in front of us, behind us, next to us. We need a little bit of a break with things that make life easier like a better parking space, a fast lane at the E.R., a frequent flyer program at our pharmacy. We sometimes enjoy the perks of an attraction open just for us (free!) to help with the crowds making it the only way we could/would attend. We need people to help clean up the aisle in the store and not give us “the look” when our day falls apart (sometimes a lot of days in a row). We need the exception of floaties and harnesses without judgement, we need to help our kids by keeping them in strollers past the “acceptable” age. We appreciate the financial breaks we get and it makes it possible for us to do other things like donate to causes or to buy equipment our kids need to function at school and home. We need people to accept our kids and work with us to help build friendships and social skills.
We need exceptions all the time.
I think people wonder why special needs parents stay in fighting mode. It’s because if we let our guard down even for a day, we miss something. Sometimes it’s something big. Or something as simple as our family getting to swim together in a community pool with our son safer by use of a floating vest. Our “fighting” isn’t fighting as much as it is just doing what we do. Or doing what we have to do.
To me, this kind of “fighting” doesn’t even feel like fighting at all. It feels normal.

Friday, June 28, 2013

If only we could find legislators in Missouri that would be willing to take this stand. Bullying by school district personnel is far more damaging than bullying by peers.

TOPEKA, Kan. — Kansas Governor Sam Brownback will sign an anti-bull...ying bill into law Friday morning. The bill, named for Shawnee student Loren Wendelburg, strengthens the anti-bullying statue by protecting students from being bullied by school personnel.

Wendelburg’s parents said five years ago when their son, who is autistic, was a 5th grader at Rising Star Elementary School, he was verbally and physically abused by a teacher.

Wendelburg testified before the house education committee in February, saying, “I had nightmares because I worried about going back to school and the teacher harming me.” He also said he was afraid to say anything because he thought it was so unbelievable for a teacher to treat a student so poorly.

Wendelburg’s parents said the teacher continued teaching at the school without consequences, so they pulled him out and home schooled him.

Wendelburg, now 15 years old, will be on hand in Topeka with the governor as he signs the bill. His parents say they hope it will prevent any further students from being bullied by school personnel.

Lambertville Public School’s autism students return for the summer session next week to find new lighting, the walls painted dark blue and other changes in their classroom.
Change is typically difficult for children on the autism spectrum, but these are designed to lessen distractions and boost learning.
The impetus for the changes came from custodian Jeff Munsey after he saw how upset one autistic girl became last December when a light in the classroom had gone out.
Munsey resolved to make the classroom a better learning space for the children. He set about learning all he could about autistic children, what makes them tick and what sends them off kilter. Then he began finding businesses and individuals to donate materials, time and money to get the work done.
On June 17, the school board gave Munsey permission to paint the room, replace fluorescent fixtures with LED lights, install a window air conditioner to move the compressor noise outside, and hang window shades.
The idea was to “sanitize the room of any distractions,” Munsey said today, June 27. “It took me six months to get the ducks lined up."
This morning, Munsey and a half dozen volunteers began spreading dark blue paint on the walls with supplies donated by Niece Lumber. By the time the children return next week, the lights, shades and air conditioner will be installed, donated or paid for by others, including Home Depot and the Lambertville-New Hope Kiwanis.
“His initiative was just incredible,” said Superintendent Michael Kozaks while wielding a paint brush.
Much of what Munsey learned came from conversations with Gary Weitzen, executive director of Parents of Autistic Children; Suzanne Buchanan, director of Autism New Jersey; and Jonathan Saben, director of the state Office of Autism.

Autistic children’s senses are heightened, Weitzen said in a telephone interview today. “They are assaulted by (common) sounds and smells and sights.” For children with autism trying to learn, Weitzen said, the hum of fluorescent lights is like a loud buzzing in the ear.

“This sets them up for success the rest of their lives."

Reducing sensory distractions allows the students to give their full attention to instruction, Weitzen said. LED lights don’t flicker and they don’t hum. Dark blue is calming. Moving the indoor air conditioner compressor outdoors removes the “loud jolt” the students experience when it kicks on or shuts down. Adding shades to the windows enables the teacher to reduce outside distractions such as a ground hog or someone mowing the lawn, Munsey said.
Arielle Staubs, who teaches the four third- and fourth-graders in the class, is convinced the changes will make a tremendous difference.
Last summer, the class was taught in a yellow room at the front of the building, she said. There was the general hubbub of being in the middle of things and delivery truck noise from the street.
When the class moved into its present room it was already a light blue. But even that had a dramatic impact, Staubs said.
“The overall calming effect was huge,” she said.
Other New Jersey schools may have designed new classrooms to meet the needs of autistic students, said Weitzen, who called POAC, “the largest provider of autistic education in the state.” But this is the first time a district has made physical changes to an existing classroom to make it better for the students, he said. “I would have heard about it."
Moreover, he said, to have the initiative come from the custodian and to have everybody involved, “It’s incredible. That’s a district I’d want my son to be in.”
Munsey knows no child with autism outside of those in Staubs’ class, he said, nor does he know any family with an autistic child, but he's adamant about giving them a fair chance to learn.
“This sets them up for success the rest of their lives,” he said.

Tuesday, June 25, 2013

Voters had an option Tuesday of four board candidates for three seats. Maybe the outcome was indicative of lazy voting habits, where the candidates at the top of the ballot get the most votes. Check, check, check and move on. But maybe the outcome was indicative of growing displeasure with the entrenched members of the board.Whatever happened, newcomer Sherri Tucker came close. She was just 2 percent shy of overcoming incumbent Jon Plaas, who won 5,065 to 4,679.

Plaas had a slim 386-vote separation from Tucker. However the top vote getter, Jeff Tindle, had 2,246 more votes than Tucker, and Jack Wiley had 1,878 more votes than the newcomer. Tindle was listed first on the ballot, followed by Wiley, Plaas and then Tucker. The top two candidates were so far ahead of the bottom two that it appears voters were gravitating toward Tucker. I like to think the people who make time to visit the polls are going in there knowing how they will vote, or at least with some knowledge of the candidates. Personally, I would never vote for someone I know nothing about. Sherri Tucker never hid the fact that her only platform was special education. She is the mother of a special-needs son and is part of a group of 40 people who feel the R-7 district is not providing adequate services for their special-needs children.

Tucker didn't go about this alone. Members of the Lee's Summit Autism Support Group picked Tucker to run against the three incumbents.This was her first time running for office, and she's pledged it's not her last. Plaas and the others circled the wagons during the campaign, supporting one another and alienating Tucker as a single-issue candidate. Plaas said single-issue candidates belong on the other side of the podium from school board members.

And to an extent, he's right, Candidates should be savvy enough to know that and campaign accordingly. That doesn't mean the candidate should never hold a single issue close to their heart. To me, that's how the system works. If you think government isn't working, then run for office or at least get involved. And when voters respond like they did here, we should all take them seriously. I can't say whether there's a problem with special education services in the R-7 district, but there's a growing movement of families out there who are saying that. "I don't feel like we lost," Tucker told me during a telephone interview. "We got our message out there and to me that's a win."

I agree, and to run up right against sitting school board members in Lee's Summit is admirable. The incumbents here are typically strong candidates with almost instant support from community leaders. The topic of special education is an emotional and complex one. These students have different needs and different individualized education programs. Some students have to find some services outside of the district and some are able to stay in regular classrooms. The bottom line is they are students, and they deserve as much attention as anyone else.

Today, in a Michigan school and in schools across America, children are being placed in physical restraints and inhumane seclusion.

These so called “treatment options” are degrading, barbaric, inappropriate, unnecessary, counter-therapeutic, harmful, and in the extreme, result in serious injury and even death. They should stop.

What makes this insidious behavior difficult to detect is that it is often out of sight of public view and, perversely, often sanctioned by parents, guardians, and credentialed professionals as a proper therapeutic technique meant to control or modify behavior. It is nearly always abusive, traumatic, and unnecessary.

While some school districts do not use it at all, it is abused in others, and there is no central state reporting mechanism to know for sure.

In Michigan, in the second decade of the 21st century, there are no policies or laws to stop it.

There is a need to make the general public and policymakers aware that these practices are still being carried out in far too many neighborhood public schools. But more important than simple awareness is the need to demonstrate it does not need to take place. People working with persons who have intellectual and developmental disabilities need training in the proper techniques for preventing the issues from escalating to a perceived need for such interventions.

There are examples of students being secluded and restrained in schools staffed with highly degreed professionals, yet this type of “intervention” is deemed unnecessary in that same person’s group home which is staffed with trained, high school educated para-professionals.

The first step in problem-solving is problem identification, particularly in the case of seclusion and restraint. Before even identifying the problem, parents, policy and lawmakers need to be convinced that this is a problem!

These same sanctioned behaviors taking place in some schools today, when done by parents in their own homes, would also constitute abuse.

Thursday, June 20, 2013

The U.S. Supreme Court declined this week to weigh in on whether or not parents should have a say in deciding which school their children with disabilities attend.

The court said it would not hear an appeal in a case brought by the parents of a boy with autism against the New York City school system.

The parents, known in court documents as R.E. and M.E., sued after the school district selected a “final” placement for their son without their input. Though the parents said they worked with the district to develop an individualized education program, or IEP, they argued that they did not agree with the placement selected and were not given any other options.

As a result, the parents proceeded to enroll the child in a private school where he had previously attended and requested reimbursement from the district for tuition costs, arguing that the school district placement did not offer the one-to-one attention that the child needed.

A federal district court ruled in favor of the parents. But the decision was reversed by a federal appeals court last year with the panel writing that the school district “may select the specific school without the advice of the parents so long as it conforms to the program offered in the IEP.”

Now that the Supreme Court has declined to hear the case known as R.E. v. New York City Department of Education, the ruling in favor of the school district will stand. The high court did not offer any comment on its decision.

Science Chief Replaced At Autism Speaks

A top executive responsible for overseeing the research and scientific efforts of the nation’s largest autism advocacy group is moving on.

Autism Speaks said Thursday that Geraldine Dawson, the group’s chief science officer for the last five years, is leaving. Dawson is being replaced by Robert Ring who has served as vice president of translational research for the organization since 2011.

Dawson is leaving to take a position at Duke University where she will conduct research and do clinical work as a professor of psychiatry and behavioral sciences and serve as director of the university’s autism center. She was Autism Speaks’ first chief science officer.

Records indicate that Autism Speaks’ science portfolio accounts for the largest slice of the nonprofit’s budget at over $24 million in 2011, according to the organization’s tax filing for that year, the most recent that’s publicly available.

As chief science officer, Dawson was the highest paid employee at the nonprofit, earning more than $440,000 in 2011, the tax filing indicates.

In addition to her role at the nonprofit, Dawson also served as a professor of psychiatry at the University of North Carolina at Chapel Hill and she is a member of the Interagency Autism Coordinating Committee, or IACC, a federal autism advisory committee.

Ring initially came to Autism Speaks from Pfizer where he was head of the pharmaceutical giant’s autism research unit.

As of last year, Ring also leads a secondary nonprofit known as DELSIA which was created by Autism Speaks to bring innovations benefiting people with autism to the commercial market.

Exposure to high levels of air pollution during pregnancy may double the chances that a child will have autism, a team of Harvard researchers said Tuesday.

In the first national study looking at a possible link between autism and air pollution levels, researchers found that women living in places with the highest levels of pollution while they were pregnant were up to twice as likely to give birth to a child with autism as compared to those living in locations with the lowest levels.

For the study, researchers at the Harvard School of Public Health looked at data from a long-term study of more than 116,000 nurses dating back to 1989 and focused on 325 women who had a child with autism and 22,000 who had a child without the developmental disorder. They used air pollution data from the U.S. Environmental Protection Agency to estimate the women’s exposure depending on when they were pregnant and where they lived at the time.

Ultimately, the researchers found that the children of moms living in the 20 percent of locations with the highest levels of diesel particulates or mercury in the air were twice as likely to have autism as those living in the 20 percent of places where exposure was the lowest.

Meanwhile, autism odds were about 50 percent greater for women living in areas with the highest levels of other pollutants including lead, manganese, methylene chloride and combined metal exposure as opposed to those residing in low exposure locations, according to the study published online Tuesday in the journal Environmental Health Perspectives.

“Our findings raise concerns since, depending on the pollutant, 20 percent to 60 percent of the women in our study lived in areas where risk of autism was elevated,” said Andrea Roberts, a research associate at the Harvard School of Public Health and the study’s lead author, in a statement.

This is not the first study to suggest a link between autism and exposure to air pollution, but previous research relied on data from just a handful of locations within the United States while the new study provides evidence from a nationwide sampling.

Scientists behind the current findings said further research should examine the blood of pregnant women or newborn babies to measure exposure to pollutants which would allow for a better understanding of how these factors impact autism odds and potentially point to interventions.

Call it the case of the hard-to-schedule meeting with a parent that may cost a school system some $28,000 in private school tuition.

A federal appeals court has ruled that a school district's failure to include the parent of a special education student in an individualized education plan meeting that changed the student's school placement was a denial of a free, appropriate public education under federal law.

The father of an 18-year-old Hawaii student with autism wanted to be included in the IEP meeting for his son. But after one rescheduling and some inflexibility on the part of the Hawaii Department of Education (the state's singular public school district), members of the student's IEP team went ahead with the meeting without the father. They also changed the student's placement from a private special education school to a workplace-readiness program at a public high school.

The school system said in court papers that it had tried to work with the parent to come up with an agreeable date and its participants had busy schedules and it faced a deadline before the student's existing IEP lapsed.

The father, identified in court papers as Doug C., was sick on the day in November 2010 of a much-rescheduled IEP meeting. He declined district officials' suggestions that he participate by phone or the Internet, saying he wanted to be there in person.

After the IEP team went ahead without him, and changed the son's school placement, the father rejected the new IEP and sought a due-process review. He also kept his son in the private school, the Horizons Academy of Maui, and sought tuition reimbursement.

Both a hearing officer and a federal district court ruled for the school system, saying that not including the father in the IEP meeting did not deny his son a free, appropriate education under the federal Individuals with Disabilities Education Act.

"Echoing the Supreme Court, we have held that parental participation safeguards are among the most important procedural safeguards in the IDEA and that procedural violations that interfere with parental participation in the IEP formulation process undermine the very essence of the IDEA," the 9th Circuit court said.

"The fact that it may have been frustrating to schedule meetings with or difficult to work with Doug C. (as the department repeatedly suggests) does not excuse the department's failure to include him in [the son's] IEP meeting when he expressed a willingness to participate," the court added. "We have consistently held that an agency cannot eschew its affirmative duties under the IDEA by blaming the parents."

The appeals court stopped short of granting tuition reimbursement to George C.'s over his decision to keep his son at Horizons Academy. (It's not clear whether only one year of tuition is at issue, or the exact amount, but according to the academy's website, base annual tuition is $28,000.) The appeals court left it up to the district court to decide whether Hawaii would have to reimburse the tuition under applicable precedents.

School ignores advice from learning disability experts

Stacie Brockman is the Prince George’s County mother of lively twin 9-year-old boys. Her sons were born two months premature. She has done everything possible to deal with the disabilities that often impede the progress of such children.

She took them to the developmental pediatricians at the Kennedy Krieger Institute in Baltimore, one of the top U.S. providers of care for children with learning disabilities. They gave the boys many tests. They diagnosed mixed expressive/receptive language disorder, attention deficit hyperactivity disorder, dysgraphia (a writing disability) and dyslexia (a reading disability).

The doctors told Brockman that her sons need to be in small classes with research-based reading instruction and intensive math and language remediation. As the law requires, administrators at Potomac Landing Elementary School set up an individualized education program (IEP) team, which meets with Brockman.

As sometimes happens, these meetings have not gone well, Brockman said. Learning disability issues appear to be one of the greatest sources of friction between parents and schools. Brockman’s account reveals how clumsy educators can be in communicating to parents what they are doing with their children, and why.

Both boys have IEPs, Brockman said in an e-mail, but the team chairperson dismissed some Kennedy Krieger assessments, “saying that all of KKI’s reports say the kids are dysgraphic and dyslexic, thus suggesting that the reports have little or no validity.”

“Although the state assessments given to the boys throughout the year show that they remain below grade level in reading and math, the IEP team feels they are making progress based on their observation of my sons in the classroom,” Brockman said. “They say this even as they inform me one son has dropped even lower since the beginning of the year and is now ‘at-risk.’ ”

“Yet when I received their third quarter report cards, the boys are doing fine — they received all passing grades! I was amazed, and disappointed because I know my sons aren’t prepared. The school is moving them forward to the fourth grade, although my children are unable to add or subtract three digit numbers, let alone know how to multiply and divide. I work with them daily but they are unable to comprehend more than two paragraphs of reading.”

She asked: “How are they to be successful in fourth grade when the teachers refuse to even admit that a learning problem exists?”

It is a good question. A. Duane Arbogast, Prince George’s deputy superintendent of academics, said he could not comment on specifics because of privacy rules, but he emphasized that county educators are supposed to take public and private assessments into consideration, including information from Kennedy Krieger. Learning disabilities are complex, Arbogast said, and teams must weigh all available sources of information.

There’s no excuse for telling a mother that some of the nation’s leading diagnosticians of learning disabilities don’t know what they are talking about. If teachers think the Brockman twins have made enough progress to be promoted to fourth grade, that’s useful information. But it seems the school could have done a better job of explaining how that, and the cheery report card, fit with one twin dropping to at-risk status. Arbogast agreed that IEP meetings require “very careful communications and relationship building.”

The mixed messages have left Brockman thinking that school officials are unable or unwilling to have a candid conversation about her sons. That’s not good. They should create a new IEP team led by someone who knows how to talk clearly and kindly to parents so they can be part of the team, too.

The video from July 2012 shows an incident between David Baier, a former teacher at the Alternative Education Foundation in Davie, and the 12-year-old boy. The incident happened after the student was put in Baier's care because he was misbehaving on a school field trip.

During the field trip, Davie police said the student became upset after being told he couldn't participate without tying his shoe. He reportedly pushed his shoe in the face of Baier and another staff member and called Baier names.

The boy then crouched and Baier told him to stand again. The boy refused to get up, and Baier grabbed the boy by his hair on the top of his head and pulled him into a standing position, said police.In the video, the boy was taken to Baier's classroom as punishment, where he was seen fidgeting. Baier instructed the student to stand, and told the student he could get his chair back if he stood still for five minutes, said police.

After being told to sit, Baier and the boy began discussing his behavior on the field trip. Baier was seen walking over in the video and threatening to throw the boy to the ground, said police.

Baier then grabbed the boy by his hair, pulled him from the chair, threw him to the ground, and pinned him down, said police. Baier then told the boy to get back into his chair.

Police said the boy never appeared physical or violent despite his verbal outburst.

Eias Hilal, an attorney representing the 12-year-old boy, issued a statement, saying: "All these allegations that we have brought forward have merit. We look forward to bringing the truth to the forefront."

Baier said little when he was released from jail. His wife told Local 10 there was more to the story, but wouldn't elaborate.

Steven Swickle, Baier's attorney, issued a statement, saying: "I believe the video is incomplete, and that it doesn't give the full picture of this particular child nor of this incident. This matter will be fully explored during the course of the trial."

Tuesday, June 18, 2013

The U.S. Department of Justice is cracking down after an investigation found that students with disabilities were unnecessarily segregated and forced to work for little or no pay for years in violation of the Americans with Disabilities Act.

In a 17-page letter sent to local officials in Providence, R.I. this month, the Justice Department’s Civil Rights Division said that students with developmental disabilities were paid 50 cents to $2 per hour, and in some cases nothing at all, to do tasks like bagging, labeling, collating and assembling jewelry. They did the tasks as part of a sheltered workshop while participating in a vocational program at Mount Pleasant High School.

Records for the workshop were poor and wages did not correlate to the jobs students performed or how productive they were, federal investigators found. In addition to school days, the workshop sometimes operated on weekends and at least one student said she was required to spend all day there at times in order to meet production deadlines.

Meanwhile, students were not offered opportunities to try competitive employment placements even when they requested to do so. And, once the students left high school, they were then funneled to segregated, sheltered workshops, the Justice Department found.

Nearly all high school-age students with intellectual and developmental disabilities in the Providence Public School District are part of the vocational program, federal officials indicated.

The report said that the city “planned, structured, administered and funded its transition service in a manner that imposes a serious risk of unnecessary segregation” in violation of the ADA. Moreover, the investigation found that the city developed and maintained a “direct pipeline” to a third-party provider of sheltered workshops and facility-based day services where students were directed once they finished school.

Providence Mayor Angel Taveras told the local television station WPRI that he was not familiar with the sheltered workshop until learning about the federal investigation earlier this year. He called the Justice Department findings “outrageous,” adding that the students “deserve better.”

The sheltered workshop has been shut down as a result of the investigation and under a settlement reached with the city and state, federal officials said Thursday that individuals who were directed to segregated placements after attending the vocational program will now be provided with supported employment services to “find, get, keep and succeed in real jobs with real wages.” Current students will be provided transition services with internships, trial work experiences and other offerings so that they can ultimately move into community-based jobs when they leave school.

Under the agreement, individuals with disabilities will work in supported employment for at least 20 hours per week, on average. When they are not working, they will be provided access to integrated, community-based recreational, social, educational, cultural and athletic activities, federal officials said.

The plan calls for those with disabilities to be supported with a 40-hour work week, according to Eve Hill, senior counselor to the assistant attorney general for civil rights. The agreement is the first between the Justice Department and any public entity to ensure what Hill called a “full-time integration” standard.

“For far too long, people with disabilities who can and want to work and engage in all aspects of community life have been underestimated by public service systems that have had limited or no expectations for them. Under this agreement, things are now changing,” Hill said.

Share Your Story

Personal stories have a tremendous impact on raising awareness and gaining allies in the movement to end restraint and seclusion. If you or a loved one have experienced restraint and seclusion in school, and would like to share your experience, please use the form below. Your personal story will help shed light on this issue and ultimately end restraint and seclusion abuse in schools

Thursday, June 13, 2013

IDEA and Kids with Special Dietary Needs

Our doctor has recommended that my daughter, on an IEP, be gluten and dairy free. The school is giving me a hard time, though I know they are providing a special lunch for at least one other student.

You’ll need to do some research (and so did we).

The U.S. Department of Agriculture’s (USDA) nondiscrimination regulation (7 CFR 15b), as well as the regulations governing the National School Lunch Program and School Breakfast Program, make it clear that substitutions to the regular school meal must be made for children who are unable to eat school meals because of their disabilities.

These regulations require substitutions or modifications in school meals for children whose disabilities restrict their diets.

The guidance addresses IDEA 2004 and the ADA and makes it clear that if a student has a documented disability that restricts their diet, the school food service department must make the substitutions as listed by a licensed physician on a medical statement form.

The physician’s statement must identify:

the child’s disability

an explanation of why the disability restricts the child’s diet

the major life activity affected by the disability

the food or foods to be omitted from the child’s diet, and the food or choice of foods that must be substituted

If your child’s IEP includes a nutrition component, the school is required to offer special meals, at no additional cost, if your child’s disability restricts her diet. When nutrition services are required under a child’s IEP, school officials need to make sure that school food service staff is involved early on in decisions regarding special meals. It would be wise to include food service staff on the IEP Team.

Nutrition Services under a Health Care Plan

Some states supplement the IEP with a written statement specifically designed to address a student’s nutritional needs. Other states employ a “Health Care Plan” to address the nutritional needs of their students.

Nutrition Services in Cases of Food Allergies

If you request food substitutions for your child who does not have a documented disability (as defined under either Section 504 or IDEA), the school food service department may make the substitutions listed on the medical statement, but is not required to, make food substitutions for her.

However, when a doctor states that food allergies may result in severe, life-threatening (anaphylactic) reactions, the child’s condition would meet the definition of “disability,” then the substitutions prescribed by the licensed physician must be made.

Under no circumstances are school food service staff to revise or change a diet prescription or medical order.

USDA Guidelines define a person with special dietary needs as someone who” may have a food allergy or intolerance (for example, lactose intolerance) but does not have life-threatening (anaphylactic) reactions when exposed to food(s) to which he/she is allergic.”

At the very least, the Guidelines strongly encourage “food substitutions or modifications for children without disabilities with medically certified special dietary needs who are unable to eat regular meals as prepared.”

State Regulations

Be sure to check your state regulations as well as your local district policy regarding school nutrition programs.

“… the Student is extremely allergic to peanuts and tree nuts. These allergies can cause anaphylaxis, which is a life threatening condition. Symptoms from anaphylaxis include itching, hives, difficulty breathing, swelling, closure of the airway, vomiting, diarrhea, drop in blood pressure, and can even result in death, as evidenced by the 500 people per year in the United States who die from allergic reactions to food.”

“The Student’s reactions are so severe that she has developed hives from being kissed on the cheek by someone who ate peanut butter. She has reacted after handling peanut butter cookie dough, even though she didn’t ingest it. She has also reacted after eating cheese from a salad bowl that previously contained a dressing with walnuts in it. I’m sure you are aware of the recent incident involving a Canadian girl with a peanut allergy who died from anaphylaxis after kissing her boyfriend who had eaten peanut butter earlier in the day. Thus, it is important to take these potential reactions seriously.”

Can you imagine the anxiety this child and her family live with, day after day, year after year? Surely, the teachers and administrators at her school will do whatever they can to help.

History

The family requested that the school develop a Section 504 plan to address the child’s allergy related needs and ensure a safe educational environment for her. The laws require that information from all sources is documented and carefully considered when evaluating students to determine their eligibility.

At this child’s eligibility meeting, six school team members – the school principal, the Section 504 chairperson (also the assistant principal), the school counselor, the school nurse, the child’s teacher, and a paraprofessional who worked in the classroom – determined that the child did not have a disability and was not eligible for services and protections under Section 504.

A complaint was filed with the Office of Civil Rights alleging that Gloucester County VA Public Schools discriminated against the child on the basis of her disabilities, denied her a free and appropriate public education that addressed her needs, and failed to ensure a safe educational environment.

“Extraordinary Circumstances” Allow OCR to Investigate

Although the Office of Civil Rights does not usually review individual educational decisions, they may investigate under “extraordinary circumstances.” In the Gloucester County VA Public Schools case, they looked at:

“… the nature and severity of the harm that could result from the school division’s failure to provide a student with a disability with Section 504 services. When a school division’s decision that a student is ineligible for Section 504 services could result in the death or serious illness of the student, there is a basis for finding that the case involves ‘extraordinary circumstances’ that support a substantive OCR review of the decision.”

The Evidence

OCR reviewed the correspondence from the child’s doctor describing the severity of her condition, information that was provided to Gloucester County Public Schools but ignored by the school. OCR expressed concerns that:

“… the evidence from the Student’s doctor was not contradicted by any other evidence, and that neither the evaluation team members nor anyone with whom they consulted had qualifications approaching those of the Student’s doctor to diagnose the nature and severity of the Student’s PTA and the likelihood, nature and severity of the harm that could result from the Division’s failure to find the Student eligible for Section 504 services.”

OCR found that Gloucester County Public Schools had their own documentation of the child’s allergies, including:

meeting minutes that describe the child has having “a life threatening food allergy” that were signed by signed by six school staff members

the child’s “Individualized Health Care Plan” which described the child has having “a severe allergy to peanuts/treenuts which can be life-threatening” signed by two staff members

The Findings

Based on the evidence, “we find that the Division’s decision that the Student is ineligible for Section 504 services could result in death or serious illness of the student, and that this case therefore involves ‘extraordinary circumstances’ that support a substantive OCR review of the result of that decision.”

The Resolution

As a result of this investigation, Gloucester County Public Schools signed a Agreement to reevaluate the Student to determine if she is eligible for services under Section 504 and Title II, and will comply with 504 procedures this time. OCR provided Gloucester County Public Schools with several sample 504 Plans.

The resolution letter concludes with this statement:

“We remind the Division that it may not harass, intimidate, threaten, coerce, or discriminate against any individual for the purpose of interfering with any right or privilege secured by the laws OCR enforces. If any individual is harassed or intimidated because of filing a complaint or participating in any aspect of OCR case resolution, the individual may file a complaint alleging such treatment.”

Gloucester County Public Schools is fortunate that OCR intervened. If this child, or another child, had a fatal allergic reaction after the school team refused to accommodate her well-documented allergic condition, they would be in very hot water. Consider the probability that a fatal allergic reaction would be witnessed by her classmates.

If you have a child with a peanut and tree allergy (PTA), you may need to educate your school district about the severity and unpredictable nature of these allergies. This OCR Resolution letter should help your district understand their legal responsibilities under Section 504. Learn more about Section 504 of the Rehabilitation Act.

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About Me

I am the mother of three beautiful children. Two of them have graduated from high school. One of those is in college taking remedial courses because she didn't receive the free and appropriate education that she was entitled to. I am now paying college tuition for that education.
My third child is autistic and was forced to drop out of school. He was receiving no services for his autism and was no longer progressing in his classes.
He was being destroyed emotionally, psychologically, and mentally. He was forced to take medication to just attend school and that affected his liver. He is 17 years old. He has a nonverbal IQ of 123 and the interpersonal skills of a one year old.
My taxes have paid for an $8.6 million administration center, $12 million aquatic center, $250,000 for band uniforms,and a $15 million elementary school with empty classrooms. They have not paid for my children's education. My district boasts that they spend the least amount per student of any other district in the area. But, they will hold up their facilities to those in the much richer county to the west. We also have the second highest tax levy in Jackson County.